There is a debilitating and disfiguring side effect of early HIV medications that causes profound suffering among our longest-term survivors of the HIV epidemic. For some, it is so severe that they do not leave their homes and become shut-ins, depressed, and suicidal. For others it causes chronic physical pain and structural damage, including spine and neck problems. And for many it is an involuntary public disclosure of HIV, still the most stigmatized health condition in America. Most public and private insurers refuse to cover the simple, inexpensive, and effective medical treatments available to remedy it.

This condition is called lipodystrophy. It is one of the most underappreciated and unattended challenges of the HIV epidemic. Massachusetts just became the first and only state in the nation to mandate insurance coverage for lipodystrophy. And we hope that the experience of the Treat Lipodystrophy Coalition in Massachusetts will become a national model for advocacy and legislation to end this unnecessary suffering.

The word “lipodystrophy” is unfamiliar to many people, even within the LGBT and HIV communities. Lipodystrophy is a consequence of the first wave of HIV medications in the late 1990s, which transformed HIV into a chronic and manageable disease. It is a metabolic disorder characterized by the abnormal distribution of fat in the body. People with lipodystrophy experience a range of disfiguring body shape changes with colloquial names like “buffalo hump” (an abnormal fat pad on the back of the neck) and “horse collar” (abnormal fat growth in the front and side of the neck and under the chin). It also causes severe wasting in the face and limbs. The effects can be devastating.

Several years ago, my organization - GLBTQ Legal Advocates & Defenders (GLAD), a legal group that fights discrimination on the basis of sexual orientation, gender identity and expression, and HIV status - began to hear from people who had been unfairly denied medical care by insurers on the specious grounds that treatment for lipodystrophy is “cosmetic.” It was through representing these individuals in their insurance appeals that I came to fully appreciate the profound physical and psychological harm caused by lipodystrophy – and to understand advocating for treatment as a true life and death matter. What we discovered was that the few people who had the capacity to lawyer up, get letters from physicians and psychologists, file an appeal citing the established medical literature about lipodystrophy, and threaten to sue, were often able to get the medical care they needed. But the very nature of the disease meant that the majority of people suffering from lipodystrophy were unlikely to be able to take on this kind of self-advocacy. It became clear that systemic change was needed.

The path to successful legislation in Massachusetts began with a conversation about the challenge of untreated lipodystrophy with Carl Sciortino, then a state representative and now the Executive Director of the AIDS Action Committee. He first raised the idea of introducing a bill and stepped up to be the original sponsor. At that time, no other legislator had heard of lipodystrophy. Most people in the HIV community, and many physicians treating them, simply assumed that coverage was impossible. Few people even bothered to try.

GLAD formed the Treat Lipodystrophy Coalition, which was made up of people living with HIV, physicians, and HIV advocacy and service organizations. We knew that to have a chance at passing an insurance mandate, we would need to find and present the stories of people whose experience living with untreated lipodystrophy would shock legislators in Massachusetts into understanding this as a critical health care issue. It was a daunting task. The shame and stigma of lipodystrophy is so powerful that many people would not meet with us and still others were not able to come forward publicly.

But with painstaking work, we were able to find a number of courageous individuals who allowed us to share their stories in the form of a book we produced called “Treatment for Lipodystrophy Denied: Sound and Compassionate Healthcare for People with HIV.” Those stories galvanized both legislators and our own community into action. We met a man named John Wallace from South Boston, whose lipodystrophy was so severe that he became hopeless and depressed and never left his home. He told us: “I’ve thought about suicide many times. But it goes against my Catholic faith.” We told the story of Mark S., who described being called “freak” and “monster” just steps from the Massachusetts State House. There is George Hastie, who recounted being denied coverage for a three-pound pad on the back of his neck that resulted in permanent spinal damage. And Andrew Fullem, who described being a “walking advertisement for HIV.”

Our first legislative hearing in March 2014 was a transformative moment. Legislators who had never before heard about lipodystrophy were close to tears. With the storybook and that powerful initial testimony as a springboard, we continued to gain traction throughout 2015 and 2016 - organizing community members, enlisting the support and expertise of respected medical professionals and healthcare agencies, engaging local and statewide media coverage, developing compelling messages and disseminating clear, concise fact sheets to legislators. We had three main messages we hammered away at:

Cost is the foremost legislative concern with insurance mandates. We countered by demonstrating that lipodystrophy not only affects a very small number of long-term survivors, but also is a fixed and shrinking population. It is an historic problem. And the treatments, generally liposuction to remove excess fat and facial fillers to remedy wasting, are inexpensive. Here’s a postcard we delivered to all legislators:

We always referred to lipodystrophy as a “disease” that requires medical care to counter the fallacy that treatments are “cosmetic.” Since when do we not treat a diagnosed disease?

Refusal to cover lipodystrophy treatments is discrimination. Insurance companies cover restorative procedures for the consequences of other diseases, such as breast reconstruction and testicular replacement for cancer patients. We don’t let insurance companies say that’s cosmetic! Refusing to treat the consequences of lipodystrophy disease is unfair discrimination against people with HIV.

When we began this process, nobody believed we had a chance at passing this bill. We were fortunate to have champions in the legislature, Representative Sarah Peake and Senator Mark Montigny, who took up the cause and pushed for passage. The law will go into effect November 9 (“An Act Relative to HIV-Associated Lipodystrophy Syndrome Treatment,” Chapter 233 of the Acts of 2016).
To be sure, HIV/AIDS advocacy and service organizations have had unrelenting and crucial battles to fight over the decades: access to testing and treatment; prevention, including PrEP and clean needles; discrimination and stigma; and the shameful criminalization statutes that still exist in a majority of states, to name just a few. But I hope we can all agree that it is intolerable to let our longest term survivors of the HIV epidemic suffer from untreated medication side effects. Here’s hoping that the Massachusetts experience begins a national call to action to address this indefensible insurance discrimination.

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Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Thursday, August 11, 2016

This year, North Carolina took a big step forward to increasing access to health insurance for individuals on our state’s AIDS Drug Assistance Program (ADAP).

For years, the HIV advocacy community has been concerned about the state’s failure to provide premium assistance for individuals who purchase their own health insurance. The majority of states across the country have such programs in place, which help subsidize the cost of health insurance for ADAP eligible patients so they can receive a broader array of health services instead of just medication. Our state took a small step forward by providing co-payment assistance for medication in 2014, but the governor’s administration claimed they were prohibited from going any further.

We knew that if we were going to gain premium assistance in North Carolina, we needed to start speaking up.

In 2015, we began preparing for a robust campaign for premium assistance for ADAP. We met with leadership at the Department of Health and Human Services that December to share information with them and make sure they understood the importance of this topic to the advocacy community. Because of changing federal guidance, the state stood to lose millions of dollars in pharmaceutical rebates that helped keep the program fully funded, which gave increased urgency to our campaign.

We built a diverse team of stakeholders who could speak up on this issue, including local Health Directors, individuals living with HIV, representatives from the pharmaceutical industry, and health care providers. We started meeting with state legislators who were members of the Health and Human Services Appropriations Committee. Everything was lined up, and although I had some skepticism that we would be successful in 2016, was cautiously optimistic.

Then on March 26th, the General Assembly passed HB2.

HB 2 was passed in response to an ordinance passed by the Charlotte City Council to protect the LGBTQ community from discrimination. Prior to the ordinance’s passage, the Governor and leadership of the General Assembly voiced their opposition to the ordinance and passed HB2 to strip Charlotte’s (and other cities in North Carolina) power to pass nondiscrimination ordinances. HB2 gained national notoriety for also requiring trans individuals to use the bathroom of the gender they were assigned at birth.

HB2 inspired significant media attention and protest, and the bill has continued to dominate statewide and national media. The business community came out strongly against the bill, and national associations and performers cancelled conferences and concerts. All of the noise started to make me nervous about our premium assistance campaign. NC AIDS Action Network supported the Charlotte ordinance; we know that LGBTQ discrimination and HIV stigma are closely linked. Though we know that HIV impacts everyone, it’s no secret that it has a disproportionate impact on the gay and trans community, and I feared that our policy change could get caught up in the tense political environment around LGBTQ rights.

Under these adverse conditions, we stayed true to our original message. Premium assistance was good health policy that would increase access to a wide range of services for low-income individuals and was good economic policy to secure needed funding to keep ADAP solvent. We generated media attention across the state and continued to meet with legislators to discuss the importance of this policy shift.

I still remember where I was when I saw the first copy of the House’s proposed budget.

Rep. Josh Dobson was a co-chair over the Health and Human Services Appropriations Committee in the House, and we had been trying to meet with him for several weeks. We finally got a couple minutes, and I sat down with him ready to make a fast pitch about why premium assistance was vital for our state. We anticipated the proposed budget would be released that week, possibly that day. After I spoke for a couple minutes, he stopped me, pulled out a copy of the draft budget, and pointed to the section that included language authorizing premium assistance for ADAP. “Is this what you’re talking about?”

I quickly realized I didn’t need to explain any more, and thanked him for his support. He explained that several of his colleagues we had already met with spoke well of this proposed change, and he was happy to support it.

From there, everything fell into place. The House budget passed without changes to our provision, and the Senate included it in their proposed budget, as well. The General Assembly passed the final state budget at the end of June, and the Governor signed it on July 14th.

I know for many states this might seem like a very small victory. The vast majority of states in the United States have already implemented premium assistance administratively without having to run a legislative campaign. We didn’t have that path in North Carolina, and we can’t help but feel victorious of the victory we achieved this year. We were lucky to have bipartisan support for this provision and leadership that understood that this was good for public health and good for the state’s economic bottom line. We now move to implementation, and supporting the Department of Health and Human Services in making premium assistance a reality for North Carolina.

From left to right- Allison Rice, Alicia Diggs, and Lee Storrow

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Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Friday, August 5, 2016

The ADAP Advocacy Association announced earlier this week that it has launched a new project to improve access to care and treatment for transgender men and women living with HIV/AIDS. The project – “Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program (ADAP)” – aims to raise awareness about issues confronting transgender men and women living with HIV/AIDS who also access care and treatment (or whom could benefit from such care and treatment) under ADAP, as well as provide useful resources and tools to the communities serving them.

According to the Centers for Disease Control & Prevention (CDC), transgender communities in the United States are among the groups at highest risk for HIV infection.[1] The CDC reports the following key demographic data:[2]

Highest percentage of newly identified HIV-positive test results was among transgender people (2.1%), compared to HIV-positive test results among males (1.2%), and by females (0.4%);

Among transgender people in 2010, the highest percentages of newly identified HIV-positive test results were among racial and ethnic minorities:

73% of the transgender women who tested HIV-positive were unaware of their status; and

HIV prevalence for transgender women was nearly 50 times as high as for other adults of reproductive age.

Among male-to-female and female-to-male transgender persons, there exists a high prevalence of clinical depression (44.1%), anxiety (33.2%), and somatization (27.5%).[3] The Department of Family Medicine and Community Health, Medical School, University of Minnesota concluded that the minority stress model necessitated education to “…confront social structures, norms, and attitudes that produce minority stress for gender-variant people; enhance peer support; and improve access to mental health and social services that affirm transgender identity and promote resilience.”[4]

Furthermore, transgender persons experience numerous healthcare-related disparities. The extent of this barrier to health care is unknown, since “U.S. health surveillance systems infrequently include measures to identify transgender respondents or monitor the health of this underserved and marginalized population.”[5]

A cross-sectional, clinic-based sample in Massachusetts between 2001-2002 yielded some interesting findings between transgender and non-transgender adults. Among them:[6]

the prevalence of HIV, substance abuse, and smoking did not differ significantly for transgender and non-transgender patients;

transgender patients were more likely to endorse a lifetime suicide attempt and ideation compared to non-transgender patients (p<0.05);

Studies reveal high HIV prevalence rates among transgender women in the United States.

Black/African American transgender women are more likely to have HIV than transgender women of other races/ethnicities.

Many social and structural factors pose challenges to preventing HIV among transgender people.

The CDC concluded, “Insensitivity to transgender identity can be a barrier for those who are diagnosed with HIV and seek quality treatment and care services. Research shows transgender women with diagnosed HIV infection are less likely to be on antiretroviral therapy (ART) or achieve viral suppression. Furthermore, few health care providers receive adequate training or are knowledgeable about transgender health issues and their unique needs.”[8]
There is no concrete data on the number of male-to-female and female-to-male transgender persons, nor gender-nonconforming persons living with HIV-infection accessing services under ADAP. That said, extrapolating data from the National ADAP Monitoring Project measured against CDC data suggests there is a need for gender-variant, culturally competent awareness and guidelines designed to better serve this underserved community enrolled in ADAP (as well as those persons eligible, but not enrolled).

Whereas excellent resources exist to promote transgender HIV testing, [11] as well as available programs, faith communities, and healthcare services, [12] presently nothing exists specific to ADAP serving the transgender community. There exists a need to raise awareness among key stakeholders – among them, ADAP Directors, community service providers, and state/local advocacy organizations – about existing and emerging issues confronting the transgender community. Furthermore, there is a need to model existing best practices[13] to ADAP across the 50 states and territories in the United States.

“It is important to focus on discussing and identifying competency measures that would aid in providing solid data collection in this area – especially with respect to the number of transgender individuals accessing services under ADAP – as well as expanding access for same by way of competency,” summarized Jen Laws, an independent policy consultant specializing in various aspects of healthcare policy and focusing on the needs of the HIV affected and transgender communities. “The ADAP Advocacy is committed to improved cultural competency for the transgender community in healthcare, in general, and what that means for the population accessing ADAP, specifically.”

The purpose of the project – “Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program” – is to raise awareness about issues confronting the transgender community accessing care and treatment under the AIDS Drug Assistance Program, as well as provide useful resources and tools to the communities serving them.